Pure stress and tension! Epilepsy seems to thrive on it!

[Adlon57]

I have had Juvenile Myoclonic Epilepsy since the age of 14, I'm 65, when I bashed my head in a swimming pool. Most of my seizures are set off by pure stress and tension, [over 400 of the grand mal episodes,] before an event, I am hopeless under pressure, any event, usually happening in the morning, my HBP builds up, almost a 'voice' in my head, panic, panic, panic! Then the inevitable aura, and BANG! Exams, hopeless, medical appointments, snap, anything half important, bang! Brain thrives on it "You are going to have a seizure!" My rib cage, every rib has been broken or fractured!" Till July this year, "your next seizure will probably be you last" a double seizure in January 2018, broken skull! It is the mental part of epilepsy, the way my mind has bent my decisions over my life, curbed my incentives all the time! I get cross, no good, tensions again, another seizure! Stuck for so many years between a brick and a hard place! Even the side effects of the medications, turning me into a zombie, my father having a major heart attack, I was on topamax, do not even remember very much about it, but I was there, as he slowly and painfully died before me! Friends and relatives, stare at me "Is he in one of his 'good times' or 'bad times' today?" then I spend about 10 to 15 minutes just trying to explain what sort of "mood" I'm in!

[coady123]

i have similar fits to you, caused by stress, it cant be helped unless i get a job doing nothing, keep away from busy places etc but it is not possible we all have to go out sometime do you know when a fit is about to start? i do

[Adlon57 in reply to coady123]

Yes I have auras before the seizure, body tenses up, blood pressure up, heart beat up, like an 'electric shock' to the system. Well rehearsed! had 400 + of them, about 30 seconds before! Look around for softest place around, bed, well carpeted place, etc, recovery position, and try to relax, breathe in and out!

[coady123 in reply to Adlon57]

sorry to hear that, mine are like a feeling in the stomache i know a fit is on the way, no electric shocks or anything like that, very hard to explain really but i know when one is coming which is good i suppose

[Adlon57]

Yes some sort of comfort, a warning, but can be very embarrassing knowing one is on the way, although have 'persuaded' my brain sometimes not to have one, right sort of relaxing technique😗if I knew why 🙃

[LaineyC9599 in reply to Adlon57]

It'd be fantastic if you could work that out and manage them all the time. You could make a fortune selling that solution, I'd certainly buy that!! I am fortunate that I have only had a couple of seizures but docs believe it was stress that started them (first one at 32) and if I get stressed then I start having trouble with my speech which is an early warning sign that I need to be careful. I know you've probably looked into all the usual things like support groups, support dogs (which can be fantastic for helping to manage stress), yoga etc etc. I wish I could wave a magic wand and make everything OK for you. If ever you or anyone else with epilepsy wants to vent then I am happy to set up a chat room or something so that people can just be themselves and say exactly how they feel (I know that I can't always be honest around my family because I don't want them to worry). I hope someone on here suggests something for you that works.

[Adlon57]

Too late for me, if there was an important event, it is an absolute disaster, I get tensed up, high blood pressure, think about various things that could go wrong, will I be there in time?, could I forget something?, will I get enough sleep?, have I taken my medication?, am I nearly out of medication?, transport there?, [I have no form of transport, always have to sort that out!] , what is the weather like?, what am I going to wear?, meals?, clothes?, do I have enough money to cover everything?, usually have seizures in the morning, always weakest then, so always try to time for event in afternoon, no good trying to go to bed earlier I NEVER sleep! My brain/epilepsy thrives on this, and have been in this routine since aged 14, I'm 65! NOW THAT IS STRESS!🥴😤😤🙄🥴🥴🥴

[Comedy]

So sorry to hear you are going through this. My son went through chronic seizures for about 13 years and one grand mal after another and we tried so many meds, Med combos etc and now he is on Depokote. It has helped his anxiety but controlled his seizures. He hasn’t had one in 8 months and even that was mild. Previously he had 3-4 a week. We looked at surgical options too but luckily they put him on this old medication. He is tired but naps for a couple hours in the morning and he is happy. Lots of luck through this incredibly difficult time.

[Adlon57 in reply to Comedy]

Thanks Comedy! Winding down now, retirement just around the corner, now biggest anxiety getting to appointments on time, been though most of the epilepsy medications, Depokote, have not heard of that one, probably several names for it? Yes my weakest point of the day is always morning, usually eventually get up around 10-11 am, go to bed late about midnight! I have had one seizure since starting in April 2018 [Vimpat/Briviact] but ET and early dementia are now drawing in🥴

[Comedy in reply to Adlon57]

Well I hope you enjoy your retirement. You certainly deserve a peaceful retirement. My son is on vimpat and Briviact and onfi along with Depokote and we will ween him off of something but he is recovering from shoulder surgery right now from convulsing that shoulder out of the socket too many times. So we were told he exhausted all meds which would have been believable considering how many he was on and did all of the prep tests for seizure surgery but looked at the results and decided against it. Then they gave us Depokote. It is an old medication and requires liver monitoring but it stopped the seizures. I don’t know why that wasn’t suggested for him prior to that. He was having. 80-100 fall down convulsive seizures a year but thank God life for him is better and he is happier. I know meds are all different for everyone but if it could help you like it did my son I think it is worth sharing. Take care and I hope your retirement makes life a little easier for you.

[Adlon57 in reply to Comedy]

I think it is Depakote, but I have too many other medical issues. I have a right shoulder just like that, pops out, the local hospital were too busy looking at a royal wedding too notice it properly🙄thus regularly doing my "Richard III impersonations"? Probably my best choice of medication these two, but many times I did not really notice the side effects until my specialist or close friends or family had noticed and told me about them, a balancing act with the accepted side effects and the number of seizures? Glad to hear your son seems to have found a happy medium! May your god go with you!

[Adlon57 in reply to Adlon57]

I basically have no confidence in myself, ALWAYS checking and rechecking EVERYTHING I do, throughout the day, then lying in bed, it comes to a crescendo brain working at top speed, what shall I do, by morning I have forgotten I have thought the night before, higher blood pressure, memories lost, angry at that, more stress, a never ending circle, what it does to my whole body this pressure and stress, more chance of another seizure, one day😤😤😤🙄